Liverpool Care Pathway

Norman Lamb Excerpts

Tuesday 8th January 2013 Westminster Hall

[The Minister of State, Department of Health (Norman Lamb)]

I do not have a Parliamentary Private Secretary sitting behind me, and I am most grateful therefore to you, Mr Weir, for your assistance with some Members’ constituencies.

I congratulate the hon. Member for Montgomeryshire (Glyn Davies) on securing the debate, and on the sober, serious and rational tone he deployed in his contribution. The whole debate, in fact, has been exemplary in that regard. I suspect that all of us in this room are after the same thing; it is how we secure it that matters so much. I have just over 11 minutes, which is not really enough to do justice to every contribution, so as soon as I possibly can, I will write to all the Members who have taken part, to update them.

I take the Liverpool care pathway extremely seriously. It has been much discussed recently: many hon. Members and members of the public have written to the Department of Health expressing their concerns, and there have been numerous parliamentary questions, too, all of which stems from a lot of media interest over the past few months. Several stories have appeared discussing the ways in which the LCP is used and what it is for. In particular, there have been a number of reports in the media alleging that patients are being placed on the LCP secretly, with no consultation with them or their relatives. It has been suggested that the LCP routinely involves medical staff withdrawing treatment, including food and fluids, from patients. Perhaps most seriously, the LCP has been accused of being a way to kill patients to save the NHS money. There have been suggestions that the Department of Health bribes hospitals with extra money for every patient placed on the pathway.

Those accusations paint a misleading picture of the purpose of the Liverpool care pathway, yet I take seriously the concerns raised by the families of patients who have experienced extremely poor end-of-life care. I am horrified by some of the stories that people have told me about the withdrawal of food and fluids from sick relatives in hospital and about the failure to inform loved ones that the patient has been placed on the pathway.

The hon. Member for Congleton (Fiona Bruce) spoke movingly of her experience, and I am pleased that she came to the round table that I held to discuss those concerns. As the hon. Member for Gainsborough (Mr Leigh) made clear, the concerns are legitimate and should be taken seriously, not dismissed because of exaggerated reporting. What happens on the front line and how we translate theory into practice are so important.

I agree with my hon. Friend the Member for Southport (John Pugh). I dislike the jargon: what on earth does “Liverpool care pathway” mean to patients and their families? We must use language that ordinary people understand, particularly at a most traumatic time for all involved. That is one thing we need to address.

One aspect of care that receives almost universal praise, as the hon. Members for Banbury (Sir Tony Baldry) and for Hackney South and Shoreditch (Meg Hillier) have made clear, is the hospice movement, which grew from Dame Cicely Saunders’s belief that, however ill, people matter at the end of their life and should never be abandoned. That is why the Marie Curie Palliative Care Institute Liverpool, led by Professor John Ellershaw, developed the Liverpool care pathway in the late 1990s. The pathway was designed to transfer the principles of hospice care—the shadow Minister, the hon. Member for Leicester West (Liz Kendall), made this point—so that terminally ill patients always get the best treatment, even if they do not receive specialist palliative care.

The Liverpool care pathway is not a treatment but a framework for managing treatments, which is important to understand. As the hon. Member for Montgomeryshire made clear, the LCP, when used correctly, is one way to ensure that the last hours or days of a patient’s life are as comfortable as possible. The guidance for using the LCP makes it clear that the aim is to support, not replace, clinical judgment. Sometimes there are questions about clinical judgment, but not about the pathway itself.

The Liverpool care pathway guidance sets out the following objectives and considerations for taking care of patients: determining whether any further medications and tests would be helpful; ensuring that the patient is as comfortable as possible—surely we all agree with that; helping the patient to take on food and drink for as long as possible, which means not denying them food and drink, as we sometimes hear; and taking care of the patient’s spiritual and religious needs, which is of acute importance to many people. The guidance reminds clinicians that unnecessary treatment or tests may cause harm rather than good.

The guidance states that regular review is acutely important. If their condition improves, the patient should be taken off the pathway. The 5% figure to which the hon. Member for Gainsborough referred is of concern and should be considered; it is essential that the medical team discusses the pathway with the patient, their family or their carers. Those people need to be fully involved in decisions about end-of-life care, even though those discussions may be very difficult. Obviously, those conversations need to happen as quickly as possible.

The Liverpool care pathway can work as intended only if each patient is fully consulted, unless that is not possible. Even then, the family must be fully involved. Through his interventions, the hon. Member for Stoke-on-Trent South (Robert Flello) made that point strongly. The opening section of the information sheet that comes with the pathway cites the absolute importance of discussion with the family. Staff must talk to the patient and their family as much as they need and want, to explain what is happening and why. That is non-negotiable. Any failure to do so is completely unacceptable.

The hon. Member for West Lancashire (Rosie Cooper) mentioned documentation, which is best practice and should always happen so that everyone can see what has been discussed. She also mentioned the constitution, and we are considering how we can give it greater traction. There is a sense that everyone agrees with the constitution, but what value is it? How can we make the constitution provide real power to patients in the NHS?

I agree with the shadow Minister’s concerns about translating across the whole system something that has been designed by experts. Such translation can be problematic and needs further attention.

[Rosie Cooper]

rose—

[Norman Lamb]

I am conscious that time is tight. I will write to the hon. Lady. If she wants to raise issues with me later, I will be happy to address them, but I need to respond to the debate.

From what people have said, it is clear that there are too many cases where patients have been put on the pathway without proper explanation, without the involvement of their family and sometimes without any notification, which is totally unacceptable. Yet again, we see how right Dame Cicely Saunders was when she said:

“How people die remains in the memory of those who live on”.

The impact is profound. My wife works for Cruse Bereavement Care, which does magnificent work helping people who have suffered bereavement. We have a duty to give such people the best possible experience as they lose a loved one.

On 26 November, I hosted a round-table meeting with patients, families and professionals—both supporters and critics of the pathway were represented—and at that meeting I announced that we will appoint an independent chair to consider how the LCP is used and experienced and to examine the accusations made in the press. We expect to announce the chair of that review very soon, and we expect that the chair will want to identify a small panel of independent experts from a range of backgrounds, including representatives from faith groups, which is important. I reassure hon. Members that the review will be independent.

The Liverpool care pathway is internationally recognised as good practice, and it is widely supported by organisations involved in end-of-life care. If people do not feel that they have received the best care or, worse, if patients cease to trust the pathway, that is a problem that needs to be addressed.

Training is fundamental, as the hon. Members for Hackney South and Shoreditch and for Congleton and the shadow Minister said, and it will be considered as part of the review. The review will systematically examine the experience of the Liverpool care pathway by patients, families and health professionals, and it will seek evidence to support or refute the accusations and to see where improvements might be needed. The review will hear directly from families. There will be a session dedicated to families so that they can tell the panel about their experiences.

The review will also consider the role of financial incentives in the use of the LCP. Like my hon. Friend the Member for Southport, the hon. Member for West Lancashire and others, I have concerns about the use of financial incentives. The review will report both to the Department of Health and to the NHS Commissioning Board by the summer.

Everyone wants their loved ones’ final hours to be as pain-free and dignified as possible. Used as intended, the Liverpool care pathway can help achieve that. The pathway prioritises comfort, dignity and appropriate care, but all that is undermined if the public distrust the pathway and if clinicians do not apply it properly. We do not dismiss people’s concerns, which I take extremely seriously. Instead, we have to ensure that care in the last few days and hours of life is always of the highest standard. Reinforcing the absolute importance of involving patients and their families in discussions on their care and treatment is essential.